Anyone had an assessment at harefield

i copd and bronchiectasis and have a 1 day assessment at harefield on the 12th of september which is creeping up fast and was wondering if there is anyone who has had one and could tell me what to expect....i also had to book into their guest house there as im in wales and i havnt had a confirmation of it should i have had one

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  • Hi Mandy I think you will be going there to be assessed for lung transplant? Have you seen this post from a day ago? healthunlocked.com/blf/post... Second reply is especially interesting. Good luckxx

  • yes it is to see if im suitable for a transplant im just wondering what chance i will have of getting some straight forward questions answering or will i leave there still in limbo and not knowing like i am now x

  • I have had a one day assessment and also a three day assessment, when they undertake a huge variety of tests. As to what to expect at Harefield, it is a fantastic place, with wonderful nurses and Doctor's who will put you at ease, though of course, by its nature you are bound to be anxious.

    As to the Guest House, to put your mind at ease, I should 'phone and seek confirmation that your room is reserved.

    Good luck at your appointment.

  • oh i was hoping to get a message from someone like you .....one of the things i wanted to know was did you get the chance to ask all the questions you needed to and more important get the answers to them

    i hope you dont mind me asking but what have you been diagnosed with and what was the outcome of your assessments

  • hi

    when you had your assessment at harefiled did they do a urine test to see if you have been smoking as im in the middle of an argument...im saying they do and my friend says they dont

  • Hello mandy6513,

    I hesitated to go into my personal case for fear that you might be mis-led by my response.

    However, yes, I was accepted for placement on the list, subject to losing weight!! After months of considering all the factors in my particular circumstances, I declined. Please do not take that as a negative thing. It's just that we are all different and able to cope with things in different ways. Since then, I have met two people who have had the operation and they are very pleased with the outcome.

    I would say to you that there is no right or wrong decision and certainly the consultant will explain things very clearly and never place any pressure on you. All the staff at Harefield are very caring and understanding. It's like no other hospital I've ever been to, runs like a well oiled machine.

    They will answer any questions you have, with clarity and honesty. I hope that someone is going with you. If so, that's a good thing, not just for the company but if you've talked things through before they can jog your memory if you forget to ask a question you want answering. Also, I find that it's easy to forget what was said and having someone with you, they may recall the answer.

    I have chronic emphysema plus, I don't know what! It particularly affects the rate of O2 transfer/exchange.

    I hope the above puts your mind at rest a little. You will never find yourself in a situation where you feel out of control. They will explain anything you ask. They will not hurry you, but will give you all the time you need to ask questions.

    Finally, I can't stress enough, don't in any way be influenced by the decision I made. We're all very different. If you feel it's right for you and you get placed on the list, I wish you all the best for a successful outcome - it's life changing.

  • Oh thank you so much for that very honest reply because your the first person ive spoken to who hasnt assumed im going to just jump into agreeing to a transplant i dont even know how i feel about having it for several reasons but the only person ive tried to talk to about it is my sister and she dosnt want to hear me say that and its her thats taking me to my appointment for the reasons you gave so i hope she will have more understanding about it by being there too and knowing that i will have all my questions answered is all i really want and you have put my mind at ease there so i really appreciate your reply x

  • Hi Mandy6513,

    So glad to be of help and hopefully some re-assurance.

    Have to say that the reaction of fit and well people expressing surprise that I declined is not uncommon. Even people on this site sometimes assume that they would not turn it down under any circumstances.

    The point is, it's not them who are having to face all the issues which will be so carefully explained to you.

    It is such a personal decision. There is no right nor wrong. I'm glad your sister is going with you and will here what has to be said.

    My basis for declining, was not the physical side of things, but far more my mental ability to cope and only I know that.

    Please be re-assured that no pressure will be applied on you. If, after the initial assessment you are deemed suitable you are not made to feel you must make any quick decision. I took 2 years before coming to my decision during which time I never felt pressurised, one way or the other.

    My advice is to go along, not with any preconceptions but with an open mind.

    As I've said, everybody at Harefield will give you all the support you need. They really are a fantastic team of people.

    Again, as I've said previously, if you are deemed suitable and decide to proceed, I wish you all the very best. It is, potentially, life changing and the lady I met the other day (who had the operation 13 years ago) was very sprightly. Nothing though overrides the fact that it is your decision.x

  • Im terrified of the operation but my biggest fear is if i have it how will i feel mentaly about having someone elses lungs in my body it freaks me out thinking about it. I may not even be offered it i will soon know. You have really reassured me again today about the fact i wont be rushed into making a choice and telling me about a lady who had it done 13 years ago because im being told it could only give a couple of years to some.....i know everyone is a unique individual case and i shouldnt compare but its difficult not to but thanks so much for your words again x x

  • hi

    when you had your assessment at harefiled did they do a urine test to see if you have been smoking as im in the middle of an argument...im saying they do and my friend says they dont

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  • I went to harefield for an assessment April 2013 but I stayed in the hospital not the guest house my daughter stayed there as she came with me. She said it was a nice place. Yes as well as all the tests different people spend time talking to you going through the ins and outs of a transplant and you can ask all the questions you want. They are all lovely people and make you feel very welcome. So don't worry to much

    Sue x

  • Thank you sue i hope you dont mind me asking but what was the outcome of your visit

  • I was told I could go on the transplant list but as yet haven't given them an answer but I am going to say it isn't for me. Good luck with your visit

    Sue x

  • Sue your the second person to tell me that and you have no idea how much you have both helped me by being so honest about it because i really dont know if i can do it if im offered one. I was telling someone else on here how i have tried to talk to my sister about it but because she would agree to a transplant so she says she wont even let me discuss it with her so thank so so much for that reply x

  • hi

    when you had your assessment at harefiled did they do a urine test to see if you have been smoking as im in the middle of an argument...im saying they do and my friend says they dont

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  • I don't remember if they do a test for that. But they do ask you to put all your urine in a pot as they collect it all for the time you are there. I think it's just to check your output

    Sue x

  • I know all of my family think I should go for it but there is so much to think about. You will find there is far more to consider once you have been given all the details. At the end of the day you are the one to go through it all so only you can make the decision. Feel free to contact me at any time

    Sue x

  • Its other people like my sister especially who dont realise how much is involved she had it in her head i would go for the one day assessment then that would be it i would be offered one....

    i dont know why she thinks that she has been to all my appointments with me and works on the district nursing team so its not like she is out of touch with it....maybe its just wishful thinking on her part but i hope she will be a bit more understanding after we go.......

    its so easy for everyone else to say do it because they all claim they would jump at it and i probably would say the same thing if it wasnt me going for it... thanks sue x

  • Hi Mandy, My consultant asked me to think about lung transplant last year and I was so stunned I couldn't bring myself to talk to him about it until very recently, though I did think about it everyday. I've now asked to go for an assessment and have been referred to Wythenshawe, Manchester though don't have an appointment yet. Like you, I'm not sure that I want a transplant, and I would guess that's a very normal reaction. Best wishes for Friday. Ann x

  • yeah i was stunned to especially as had only been diagnosed the week before but i just keep telling myself im going for a chat its the only way i can get myself there

    thanks hun

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